Washington Bureau Goals
by Elizabeth (Issie) Karan 

Prior and during the 2021 strategic planning session, the Hemophilia Alliance advocacy and legal team (Mike Glomb, Johanna Gray, Issie Karan and Ellen Riker) joined with Board members to assess progress on advocacy and legal goals during 2020 and to set priorities for 2021.

As we look to 2021, the advocacy and legal team plans to continue to our advocacy work in all of these areas, including:

• Closely monitoring high priority areas for HTCs, including related to 340B policies related to discriminatory pricing and compliance; access to care including with respect to the Affordable Care Act, Medicaid, and Medicare; and coverage, reimbursement, and drug pricing proposals;
• Proactively reaching out to influence the implementation of the Hemophilia SNF Access Act and educating the HTC and patient communities, as well as the broader skilled nursing facility community as the law is implemented this fall;
• Working with patient groups and coalitions on policies related to accumulator adjusters and to ensure that patient protections in private insurance remain intact;
• Collaborating with the Alliance payer team to monitor and assess 340B discriminatory pricing issues and Medicaid policies which limit treatment options for patients; and
• Holding another successful virtual Hemophilia Alliance Hill Day in May 2021! We hope that you will consider joining us – there are many new faces in Congress that we need to educate about our community and what policies are important to us.

We anticipate many new policies in all of these areas due to the change from the Trump to the Biden Administration and start of the new 117th Congress. We will continue our work to educate Alliance members as new policies are rolled out and encourage you to contact any of us with any questions or as new issues arise at your center.